Twinkie Tuesday Valentines

Since Valentine's Day falls on a Tuesday and Tuesday's Twinkie day, Cody took his favorite treat to share with friends. They aren't as cute as the Minion Valentines I made in 2014, but I AM 9 years older, so...

(Paper Minion Valentines purchased from Etsy's handnheartdesigns2.)
 

Happy Birthday Cody!

It's this dude's birthday today. This guy trusts like a child, loves unconditionally, and is doing his part to make saints out of sinners. He has proved doctors, psychologists  and educators wrong, beat the odds more times than I care to remember, and has touched the heart of each person that is lucky enough to know him, while at the same time, tested every fiber of their patience. Gosh, I love him! 

Happy 34th Birthday Cody!

Asperger's and Fries

While watching TV as a family one evening, Jim Parsons, the actor who plays Sheldon Cooper on The Big Bang Theory, came on the screen. One thing lead to another and our conversation turned to Asperger's. Cody, our son who is autistic and always trying to involve himself in conversations, threw out the question, “Asperger’s and fries?”

It only took us a few seconds to realize that Cody thought we were talking about some kind of hamburger. Cody was food pairing and like peanut butter goes with jelly and macaroni goes with cheese, burgers and fries are meant to be together. After a good chuckle, we explained to Cody, “It’s Asperger’s, not Asburger’s” and clarified the difference in spelling.

Then it dawned on me. Asperger’s and Fries would be a brilliant name for my blog, considering I post mostly about autism and food. But I’m not going to change my blog’s name. I have far too many things linked to Snippets ‘N Stuff.

Cody’s “Asperger’s and Fries” would also be a splendid name for a restaurant, if I were going to open one, which I’m not…unless somebody out there wants to help out by investing money, then I’m all ears.  J

Cody's Kind of Cursing

On weekday mornings, after Cody eats breakfast and has a bath, he plops down in the recliner, listens to the morning news on television and waits for a ride to his day program. 

This morning, as I was cleaning the kitchen, I heard Cody repeating, "Dumb something....(pause)....Dumb something....(pause)....Dumb something." 

Undoubtedly he was trying to get my attention, so I decided to stop and ask Cody why he was using the word dumb over and over and over. This his how our conversation went...

"Dumb what?" I asked.

"On TV." Cody replied.

"What about it?" I coaxed.

Cody, in his typical autistic manner, responded with clues rather than a complete sentence... "On TV. That person." 

"What person? What are you talking about? I don't understand." I continued.

Cody hinted, "WELL, you and dad call people that when you're frustrated." 

At that moment a little light went off in my head and I guessed, "Dumb shit? Are you calling someone on TV a dumb shit?" 

Cody smiled, then he readily admitted, "YES!"



And now you know that my husband and I are the kind of people who talk to the TV screen while watching reality television, game shows and news programs. :)

Turning 50 Part 3

Surprise parties are fun... unless you happen to have autism and aren't clued in. People with ASD thrive on routine and Cody's no exception. Katelyn took this into consideration when planning my party, but felt she had no option but to keep it from Cody, for fear he would slip up and say something. Looking back, however, I actually think Cody handled the evening pretty well, considering Don and I were SUPPOSE to leave and go to dinner, instead of stay and mingle, and he was SUPPOSE to be alone with Matt and Katelyn, instead of in a noisy crowd of people. 

Cody, who happens to be blind as well, loves his family and friends very much and knows most of them by sound and a few of them by feeling their hands and arms. He became really excited when, as the minutes passed by, he heard voices of different loved ones. Once he realized they were in the room, Cody would blurt out, "Grandma!" or "Teresa Pie!" or "T-T-T-T-Tony!" (He likes to nickname almost everyone.)

Before Don and Cody and I arrived, Katelyn asked everyone to write down their favorite memory about me. Later, she read each one and made me guess who they were from. It should have been easy, but wasn't. I'm not use to being in the spotlight and my brain was on complete overload. My sister, who is a whopping two years younger than me, quite enjoyed watching me struggle. She blamed it on my age and told me, "You know DeeAnn, the brain is the first thing to go."

The following are a few of the handwritten memories from those who chose to participate. Because each individual means the world to me, I want to include every one. Therefore, I'm going to have to extend my Turning 50 blog posts series from 3 to 4.  My apologies. ;)

This is my little brother, Brandon. I did not slap him. It had to have been Teresa. :) I DID slam his finger in the car door once, but it was an accident. And...when Brandon was in his early teens, he DID scare the hell out of Don by tying a pull string firework to the microwave, then politely asking Don to please get "the butter" out of the microwave for him. When Don opened the microwave and the firework popped, it scared the crap out of him. Don was pissed, but the rest of us laughed our guts out. 

Cottia is my niece. I decided after NOT being able to guess Cottia's and Amberlee's (below), that I suck as an aunt. 

Kelsie is also my niece. She has an awesome husband, Jeremy, and three adorable little kids.

This one is from my brother-in-law, Tony, and I guessed his right away. I don't even want to attempt to explain. I could try to get him and Teresa to write a guest post about it, but reading the story would not even come close to hearing Tony talk about it. :)

This is from another one of my blog supporters, my mother's husband, Lynn. He is always

encouraging me to write and I appreciate that. Thanks Lynn! 

This note is from Maddison. She is technically my cousin, but more like a niece. Maddi and Katelyn are the same age and great friends. Don and I loved taking Maddi with us to Disneyland and she is right... nobody loves Disneyland more than me. 

This one is from my sister-in-law (Brandon's wife), Melissa. We DO love to play games on holidays!

Awww. Love you too mom!

Turning 50 Part 1 (Yes. It Was THAT Good!)

I did it. I hit the dreaded, milestone 50th birthday yesterday and I've got to say, it wasn't at all bad. In fact, thanks to my awesome kids, fabulous extended family and amazing friends, it was the BEST birthday I've ever had!

The morning started off great with Cody giving me a C.O. My facebook friends know the story behind this gift. For those of you who don't, Cody has wanted to get me an electric can opener (C.O.) for my birthday for awhile now and not because I need one. Cody, in all his autistic glory, has WANTED me to want one.

When I arrived at the school, Mrs. B. had these sitting on my table, along with a cute card...

She and the children sang the birthday song to me and, when the Kindergarten students wanted to know my age, I responded, "I'm a grandma, so how old do you think I am?" One little girl shouted "18!", which was much kinder than Cody telling me I was almost 100.

After work, my husband treated me to lunch at Olive Garden and, when we got home, Casey had been at our house and left a card and this gift on the kitchen counter...

A 50 dollar iTunes card for my new iPhone! Hellzzyeah! :)

AND...

Throughout the entire day (week/month/?), I had NO idea THIS was going to happen...

I had to erase the address and phone number. Obviously. :)

You will want to stay tuned for Turning 50 Parts 2 and 3. I promise it gets even better!

Autism Is...

New, Disturbing Stats About Autism

The Centers for Disease Control have released new data about autism in the United States. Now 1 in 68 children are on the autism spectrum and 1 in 42 of them are boys! This is alarming to me on several accounts, but here are two in particular: #1- My children are at the age where they ARE or WILL BE starting families of their own. For obvious reasons, just the idea that my children could have to raise a child on the spectrum sends me right over the edge.  #2- I am nearly 50 years old and still caring for my son with autism, something Rep. Chris Smith from New Jersey addressed to the House of Representatives back in 2011. He said, "As aging parents can no longer take care of their children and are worried they don't have that many years left on earth, they are frightened about what happens to their beloved child, we need the aging out issue to be addressed and we need it now." 
(Please read  I May Never Be an Empty Nester to learn more about how I feel regarding this issue.)

I don't know what the answer is to this growing health crisis, but I do know that I can help by raising awareness. April is Autism Awareness Month and April 2, is Light It Up Blue. There are a couple of simple ways you can help. Make a donation to Autism Speaks and/or purchase blue light bulbs from your local Home Depot or hardware store and light up your home this coming Wednesday. Let's all be proactive in this fight against autism.

Guest Post by Cindy Robertson Michie/ Dropping My Son with Asperger's Off at College

Cindy, a friend of mine whom I haven’t seen since high school graduation, agreed to do a guest post for me. The two of us grew up together in a small town. Our graduating class had less than 50 students, so you can imagine how close we all were. I have many good memories of Cindy. She and I were on the drill team together, we ran on the same 880 relay team, we sat next to each other in driver’s ed. (This I remember because she is left handed and we about drove each other nuts trying to write out assignments.) I also recall how she loved tomatoes and would gladly take them from friends in the cafeteria who did not. Her hamburgers always had more tomatoes than beef.  J

I reconnected with Cindy on facebook and had no idea she has a son with special needs until I saw one particular post this week. I read it. I cried. And I knew I needed to ask her if I could share her words of anguish, fear, hope and encouragement on my blog. I am so happy that she agreed and I know that her story will help many families dealing with ASD. Here is Cindy’s article…

"I was looking at the pictures we took a week ago when we dropped Jake off at BYUI. When I saw this one I thought how perfect it was. We took him to lunch before we left town and he ordered this hamburger which was larger than his head! As I look at it I realized that in a way this burger represents Jake’s life with Asperger’s. Due to his disorder, things that we take for granted are extra-large for him to tackle. But that doesn’t stop him from sitting up to the table with every intention of eating every bite! 

Dropping Jake off at college was one of the most difficult things I have done. For 20 years we have worried about this child. We had practice conversations to help him learn to communicate better with friends. We mapped out his every move because the unknown was frightening. We practicing holding eye contact with others, and rehearsed possible scenarios for school days, field trips, church activities and work. He worked on it all until he mastered it to the best of his ability. We set a goal to have no IEP by the time he graduated from high school and it came off as a junior. He set and met MANY goals. Every time I worried about a hurdle Jake simply laced his track shoes on and faced it again and again, falling over and over until he cleared it. Then with that fabulous smile you see in this picture, he would look forward to the next hurdle which was inevitably there.

After dreading for months the day we would drop our Autistic son off to fend for himself at college, he once again surprised me. We had planned to stay for two days to get him settled and after day one he graciously asked us if WE were ready to leave. I was worried that he would be unsure of his ability to take care of himself…  instead I realized that it was me that was worried. He’s totally ready. He has prepared himself for this day and like all the others, tackled it with enthusiasm. He has taken classes at JCCC for the past two years and transferred as a junior. He worked 30 hours a week and paid every penny for school and even managed to put $6,000 in the bank. He called the counselor at BYUI months ago and asked for a meeting to decide the schedule which would be right for him. He is a physics major doing school work that I could only dream of doing. I will never forget the look on his roommate’s faces when after talking to him and making some innocent preconceived opinions about him, patronizingly asked him what his major was…the look of surprise on their faces was priceless! They looked at him a little differently after that.

I remember the day we got his diagnosis and I cried out to the Lord about why he would send this child to me. I am not THAT mother. I am not good enough to be the mother of a specials needs child, one who would be different and would require patience that I didn’t have. I was certain I couldn’t do it! But what I didn’t know was that we would have the best teacher. Jake was there to teach and guide all the way along and from him I have learned soo many lessons; patience, perseverance, kindness, determination and unconditional love. We were not ready for the challenge but he is. He is anxious for this new hurdle in his life. I thank heaven for the extreme honor it is to be his mom and I look forward to the new things I will learn from this gentle giant."

Momma Said There'll Be Days Like This/ Part 2

Every week day I send a lunch, as well as a snack, with Cody to his day program. Because mornings are rushed, I try to think ahead and get as much ready as possible the night before. I set out Cody's lunch box, place anything that is non-perishable (chips, etc) inside, clean and fill his water bottle, make sure his reusable Blue Ice block is in the freezer and then I get a small brown paper bag from the drawer to hold his snack.

With one seemingly small but nearly disastrous exception, the routine wasn't any different yesterday. While preparing dinner, I decided I'd grab a package of Chips Ahoy cookies from the pantry for Cody's morning snack. I carried the cookies to the kitchen counter, set them down, got a brown paper bag out of the drawer, found a Sharpie, wrote "Cody's Snack" on it, then put the brown bag inside his backpack.

Several hours later, I noticed there were some Chips Ahoy cookies sitting on the counter where I keep the pens and Sharpies. Puzzled, I went to Cody's backpack, looked inside the brown bag that I had labelled "Cody's Snack"and found my digital camera!

Apparently I'm "losing it", but had Cody found that camera in his snack bag today instead of something edible, HE would have "lost it" more than I.


See Momma Said There'll Be Days Like This (Part 1) 

Blessings of Cody

The following was written by my daughter, Katelyn Lancaster Boulton, for one of her college writing courses:

BLESSINGS OF CODY

Raising a child with disabilities is not only a challenge but also a blessing.

The Lancaster family, from St. George, Utah, explained the joys of living with a disabled son, grandson, brother and friend. Each member of the family has been changed because of the awareness of disabilities they have been exposed to.

Cody Lancaster was born with CHARGE Syndrome. According to the CHARGE Syndrome Foundation, the condition refers to individuals which have multiple birth defects, including coloboma (an eye abnormality), choanal atresia (blockage of the nasal passage), unusual ears or other problems. While many cases of CHARGE have been linked to a mutation of the CHD7 gene, the syndrome is primarily a diagnosis based on physical features.

Brother Chase Lancaster explained the syndrome in simpler terms. “I don’t tell people he has CHARGE Syndrome,” he said. “I tell people he’s blind and autistic because people don’t know what CHARGE Syndrome is.”

 Cody does not have heart problems, nor is he deaf, but he was born with no eyes and because he has choanal atresia, doctors didn’t expect him to live for more than two days. He is now 31 years old.

Cody went to special education classes in public schools until he was 7.  “It was then that his dad and I had him evaluated at the Oregon School for the Blind in Salem, one hour north of Eugene,” mother DeeAnn Lancaster said. “After an extensive three week evaluation, we were so impressed with the school that we made the decision to have Cody schooled there. We would drive Cody approximately 60 miles to school on Mondays, then pick him up and bring him home on Fridays. He spent four nights a week at the dorms on campus and three nights a week at home.”

There were several dorms on campus, staffed with a number of employees. Each dorm had a leader, often referred to as a dorm mother. The school campus also had an infirmary staffed with nurses, a cafeteria, bowling alley, roller rink, track, playground and swimming pool. Cody loved his time spent at Oregon School for the Blind and has fond memories of his friends and the time he spent there.

Cody needed several surgeries as a baby. He has a shunt because he was born with hydrocephalus, which is water on the brain. A shunt provides a passage and allows fluid to move off the brain. Cody’s shunt moves fluid from his brain to his chest cavity, where it’s absorbed. He had a cleft lip when he was born that was repaired by a plastic surgeon. He had surgery three times to unblock his nasal passage. “Each time failed, so his dad and I decided against trying it again,” DeeAnn said. “Cody has lived his life not breathing through his nose. We think it is for this reason that Cody has never sneezed.”

When Cody was around 8 years old, he had his first seizure. “That was a scary time for us because he wouldn’t come out of it,” DeeAnn said. “We had to take him to the emergency room so they could inject a drug to make the seizing stop.”

Doctors decided Cody needed to be on a seizure medication, so they gave him Dilantin, a drug that remains in the body anywhere from weeks to months after it’s initially introduced. After about three weeks, Cody broke out in a rash and became really sick.  “It turned out he was allergic to the Dilantin, but he had three weeks’ worth of the drug in his system, so he was hospitalized until it wore off,” DeeAnn said. “We did not think he would live through the illness. He was that sick.”

DeeAnn said the shunt the neurologist placed in Cody’s skull miraculously lasted until he was around 14 years old. It was then that Cody became extremely ill and had to have a new shunt. He spent over three weeks in the hospital. Once again, doctors didn’t expect him to live. Because of staff infections and other problems, Cody had to have his shunt replaced two more times, for a total of three surgeries in a six month period.

Father Don Lancaster said watching Cody go through multiple surgeries is what influenced him to become an EMT. “You never know what’s going to happen,” he said. “You have to always be prepared.”

DeeAnn echoed her husband’s words, describing the moment when she knew Cody had to be assessed for autism. “After watching an episode about autism on ‘The Sally Jessy Raphael Show’…I decided Cody needed to be evaluated for autism,” DeeAnn said. “He had several of the characteristics that were discussed on the television program. He was able to be evaluated while at OSB and was diagnosed with moderate autism.”

Although Cody talks and doesn’t mind being touched—like most autistic people do—he hates having his routine changed, much like the movie ‘Rain Man,’ whose main character suffers from autism and has to do certain things at certain times and places. 

Cody too has a routine he follows. He goes bowling on Mondays, eats a Twinkie for lunch on Tuesdays, watches ‘Survivor’ and ‘Criminal Minds’ on Wednesdays, walks the track on Thursdays, watches a movie on Fridays, watches cartoons on Saturdays, and attends church on Sundays. Although autism has its disadvantages, it also makes Cody who he is. He can be quite a character.

Chase said if anyone is watching television or listening to the radio with Cody, they can’t change the channel or the music because it breaks Cody’s routine. Chase laughed as he talked about the number of times he has watched a show he didn’t want to or listened to unpleasant music in order to keep Cody happy.

DeeAnn said in the case that his routine must be changed, Cody has to know well in advance. “Heaven forbid Obama ever has to speak,” DeeAnn said with laughter, explaining that during breaking news events, such as presidential speeches, Cody throws a fit, not able to understand there are some things that just can’t be controlled.

Brother Casey Lancaster said having a disabled brother has been beneficial because you “learn to raise a kid basically.” Casey explained that Cody won’t use the bathroom without being told, and the family has learned to read Cody’s signals and needs from the non-verbal cues he gives. These cues could be anything from something simple, like Cody fidgeting in his seat, or something more complex, like Cody becoming sad or angry.

Sister-in-law Talitha Lancaster married into the family July 2012 and has adopted Cody as her brother. “I have learned in the period of time of getting to know Cody that he has his routine in things just like anyone else,” she said. “Now that I know Cody, I can’t even picture him not being around. I’m glad to have met him, and he’s a part of my family now.”

Cody has developed a close relationship with his father, and the two of them often joke with each other. Cody imitates his dad in every way, mostly by repeating things his dad says or the way he says them. His father, from South Carolina, has a strong accent, and Cody finds entertainment by pretending he’s also from the South.

Cody learned braille and mobility (how to walk with a cane) while at the school for the blind.

When the Lancaster family moved to Utah, Cody was once again placed in the public school special education program and involved in inclusion. Although he missed being with his friends and teachers at Oregon School for the Blind, he thrived being around “normal” peers. Some of his best friends were made through the peer tutor program at Pine View High School.  

Upon leaving the public education system, Cody started attending TURN Community Services, a program providing services for people with disabilities. Much like school or a job, Cody is at TURN weekdays from 8 a.m. to 2 p.m. The program provides an entertaining and educational environment for disabled individuals.

DeeAnn said the employees at the program have been exceptional. DeeAnn kept a note from a previous employee, Katie Johnson, who is no longer with TURN. Katie wrote: “It’s my last day today, and I wanted to do something special for Cody because he’s my absolute favorite client. There were a lot of days when Cody was my reason for coming to work, and I’m going to miss him a lot, so I made this mix CD for him to keep of songs that remind me of him or that he really likes.”

Cody loves listening to 95.9 The Hawk, 1980s music, watching home videos, eating Kit Kat candy bars and macaroni and cheese, watching the movie ‘I Now Pronounce You Chuck and Larry’, and playing Atari video games at his grandma’s house. Cody does not like ice cream, popsicles, lollipops, gum or cold fruit.

DeeAnn said Cody used to eat cold foods when he was young but after his first dental surgery, his teeth became sensitive.

Cody has not only influenced his family, but he also has influenced everyone who has ever known him.

Cody is a miracle before anyone’s eyes. He has used his disability as a way to make others aware of the importance of life—and the greater meaning therein.

Brother Casey Lancaster said: “It wouldn’t be a life without Cody in it. He’s always been there. I wouldn’t know what it’s like without him.”

Grandmother Marilyn Crawford-Bauer also explained. “He makes us think about what’s important in life and what’s special,” she said. “Things could be so much worse.”

Left to Right- Chase, Talitha, Asher, Casey, Matthew, Katelyn, DeeAnn, Walker, Don ,Cody

Photograph by M. Felt Photography

Hakuna Matata

Cody broke into song after learning about a certain medical examination Don will be having next month. To the tune of Hakuna Matata, Cody sang for his dad, "It's a problem free...colonoscopy.". 

So about the procedure........."No Worries" Don. :)


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An Atypical Gift for an Atypical Person

Cody's birthday is coming up in a few days and once again we are scrambling to find the present he is requesting. Usually Chase is the sibling that has to go on a wild goose hunt to track down Cody's odd ideas for gifts, like the Pretty in Pink Soundtrack or Bette Midler or Tina Turner (see this post ), but somehow this year the job landed on Katelyn and Matthew.

While shopping at Barnes and Noble this morning, an employee asked Katelyn and I if he could help us. Katelyn proceeded to tell him that she was looking for a movie sound track. When he asked which one she was looking for, Katelyn said "I'm looking for the I Now Pronounce You Chuck and Larry soundtrack. I'm not sure it even exists." 

The employee had never heard of it but was very gracious and said he would look it up on his computer. When he inquired why Katelyn was looking for this particular soundtrack, she explained that her brother is having a birthday and he loves the movie, especially the music played in it. Lastly she added, "He's autistic."

Just like we figured, there is not a soundtrack to the movie I Now Pronounce You Chuck and Larry. Between now and Sunday, Katelyn and Matthew will have to figure out which songs are in that movie, buy an iTunes card, download them to a computer and either burn a CD or put them on Cody's iPod.

Cody does not ask for much, but when he does, we usually have to go to great lengths to get it.

What It's Like to Have a Brother with Autism

My mom introduced me to the following video:



I think Chase, Casey and Katelyn should make a video like this with Cody. They are amazing siblings!

Why Parents Blog About Their Special Needs Child

I want to share an article I came across written by Leigh Merryday, a mother of a special needs child. Please click on the link below...

I May Be Oversharing About My Special Needs Child and That's Okay

Protecting People with Disabilities

My son with disabilities came home from his day program yesterday with this on his backside...

This is the top of his left leg, right under his buttocks.

He was taken to a park and put in a swing for about 15 minutes (so I've been told) in 100 degree weather.

Reports are being filed, action is being taken and changes will be made.

I'm posting this in hope that mothers, fathers, nannies and caregivers will see how dangerous it can be to take children to a playground when temperatures are soaring.



Sometimes being Cody's mom sucks everything out of me. Taking care of someone with disabilities is hard enough without having to deal with this kind of shit crap.

April 2, 2013 is World Autism Awareness Day. Join Autism Speaks in Lighting Up Blue.

Chit-Chatting with Cody

Keep in mind that Cody is autistic as well as blind while you read these brief, yet humorous dialogues that recently took place in our home:

Don, Cody and I were sitting at the table eating lunch and engaging in casual conversation. After a minute or two of silence, Cody spoke up and asked, “Whatcha giving me dirty looks for dad?”

After Christmas, Don packed up our rocking musical reindeer along with the other decorations and Cody wasn’t a bit happy about it. He told his dad, “You’re a Jack.” (Because he refuses to swear, that’s Cody’s way of saying Jack Ass.) Then, in the same breath, Cody said, “I’m talking to you precious dad.”

Katelyn, Matt, Cody, Don and I were sitting in the living room one evening when Cody unexpectedly shot out of the recliner and said “Hey Guys?! (pause) I can’t see!”

Attention Parents of Children with Autism

Check out this social network just for you...

My Autism Team

Fireflies from the Jubilee Project

The Jubilee Project makes videos for a good cause. This particular short film was made to raise awareness for autism. The little girl in the video said she acted the part because she has a brother who is autistic. Please watch. It is precious.



Behind the Scenes...